I've just been reading back through recent blog posts, which are coming less frequently as Sophie gets older and needs less medical attention, and I couldn't help but notice the striking level of what can only be called anger in my posts about her developmental assessments.
I sort of want to reach back to last year and slap myself a little, because really- it would probably be hard to sound less grateful than I did at times.
But it got me thinking about what an important role anger, or rather, letting our anger out in the right ways, plays in our own psychological well-being as parents of kids who have been through hard times.
The first time someone emailed me in anger over Sophie's story, I was caught by surprise. It had never occurred to me that our miraculous luck could be the cause of hurt for someone else, and yet it has been- not just one person, but several, now. Initially I struggled to comprehend it, but it didn't take me long to put myself in their shoes and understand why it's so difficult to hear someone like me talk about how well someone like Sophie is doing.
There are thousands on thousands of other families out there whose kids have been diagnosed with HIE, and their outcomes run the gamut from fantastic, to not so good. It's easy to read what I say about Sophie and how well she's doing, and interpret that as me saying she's fought harder or done better than other kids whose outcomes haven't been as good as hers.
But that is *never* what I'm saying. I would never, ever compare Sophie to another child, whether they were doing better than her or worse. When I celebrate her achievements, it's because she's amazing and she's a fighter and she's a total inspiration as an individual. The *exact* same thing is true of every single HIE child. There are so many inspiring stories out there and so many incredible kids and families- hearing every day how hard people work to help their children makes me want to be the best parent I can be. It stops me taking our luck for granted. And it makes me want to help others however I can, hence Hope for HIE.
But people need to vent. I get it, and I'm okay with it being directed my way. No matter how hard I try to make sure everyone knows that I'm not flaunting Sophie's story thoughtlessly, or to cause pain, it is genuinely going to cause pain to some regardless, and I'm sorry for that.
If our story has ever caused you hurt, you have the right to tell me about it, and I'll be here to listen. And if I've done something unintentionally insensitive or just plain wrong, I'll make sure to change it.
I understand the anger, and reading back through those posts on Sophie's assessments, I see it shining through in my own words. My anger has been vented at the system, and the testing that drives me crazy, but really, it's all about the fact that we have to do it at all. It's about not wanting to hear that she has any delays- not wanting her to have had this injury, no matter how well she's doing now. I hate HIE. Hate it. I've used this blog as a space to let my anger out, and it's been therapeutic for me. I've felt better. It's even helped me understand my frustrations a little more, and it's allowed me to concentrate on the most important thing- helping my daughter grow.
So, I'm going to be a little less hard on myself when I read back over those posts, and see them for what they are- a reminder of how stressful that time was, and how important it is to get your emotions out in order to work through them.
Great post Claire. Sophie has come a long way and her achievements deserve to be celebrated. As the mother of a child who is doing "less well" than Sophie, I understand that it can pull at the heart strings sometimes to read about others who are doing better, but I know myself that I shout every one of Joshua's accomplishments from the roof tops, and that I too do not intend to rub that in the faces of people who aren't doing as well, but it comes down to the fact that our kiddos have fought hard for every single thing they can do, and that we as parents haven't exactly had it easy either, so we deserve to celebrate the small things (and the big things) along the way. And your continued involvement to help other families on their HIE Journey is commendable.
ReplyDeleteA few years back, my child had brain damage from birth AND additional damage from an accident at five weeks. There were long days as you know. There were days with breakthroughs and days with none.
ReplyDeleteShe's 37 now. Working full-time. A two-time mother of two little boys. I believe everyone deserves a bit of hope for the future. My very best wishes for your Sophie.
Yes we are entitled to feel angry because what happened to our children is not fair. Babies should not have to fight to earn the right to live when they have just been born. Babies should not have to spend their first weeks in NICU with desperate parents. I had this anger in me quite quickly after Anton was born. Funnily enough, this anger seemed to disappear and leave room for more positive feelings after I found your blog. If anything, I am more angry at the people who went through HIE, had a positive outcome, and never bothered to document it. Because when you are in the middle of it, you'd give just about anything you have to hear one story of hope. I was overjoyed when I found Sophie's blog. I wanted to thank you so badly because at that time, you were the first light at the end of the tunnel.
ReplyDeleteOur babies are all amazing and equally deserving. I don't consider Anton less "good" than Sophie because he is not doing as well as she is. He has all the time he needs. I look at Sophie, and I think he will get there. And I don't think I am in denial, I just believe in him. He might not be as bright as Sophie, but in time he too will jump up and down, he too will speak his mind and make me crack up.
I am not angry that she has so far done better than he has, I am hopeful. I know firsthand that men need a little more time than women. ;-)
i never even thought of the idea that someone could be angry that someone elses child is doing better than theirs....let alone to strike out at a parent who's child has been to hell and back and is doing better now...
ReplyDeleteMy son is only 7 weeks old now and dealing with a HIE diagnosis (II-III) and seeing other children doing better than him doesnt make me angry...especially at the child or the parent. Maybe a little sad, but then i always remember my son is perfect, and doing the best he can do. and it's my job to do the best i can for him as well, and misdirected anger is not helping him in any way.
I feel for the parents with children who dont do as well. i watched far too many families come and go under sad circumstances in the NICU...